The American Kidney Fund (AKF) does what no other nonprofit does—we provide a long-term financial safety net for our nation’s dialysis and transplant patients, helping them cope with an extremely challenging, life-threatening condition—while also working to prevent new cases of kidney disease.
More than half a million people in this country with kidney failure rely on dialysis to survive and nearly 100,000 are on the kidney transplant waiting list. We’re dedicated to ensuring that every patient has access to health care, and that every person at risk for kidney disease is empowered to prevent it. It’s important to have the accurate facts about our programs.
AKF was created almost 50 years ago to address the uniquely challenging circumstances facing these patients. End-stage renal disease (ESRD, or kidney failure) is a life-changing disease that forces patients into dialysis treatment three times a week, often robbing them of their ability to work and to lead the kind of productive lives they and their loved ones want. For tens of thousands of patients who turn to AKF each year, our advocacy and support stand between them and financial ruin.
Kidney failure devastates people physically, emotionally and financially. ESRD cannot be cured, and without dialysis or a kidney transplant, it is fatal. The vast majority of dialysis patients are unable to work. When a family loses a breadwinner, or when individuals lose their income, it can be catastrophic financially. According to the Kaiser Family Foundation, the average ESRD patient on Medicare faces annual out-of-pocket expenses of more than $7,000, not including health insurance premiums.
For nearly 50 years, the American Kidney Fund (AKF) has been the safety net for low-income dialysis patients living with kidney failure, helping them afford access to the health care that keeps them alive. One of our programs, the Health Insurance Premium Program (HIPP), makes sure that low-income dialysis and transplant patients can afford their health insurance, providing long-term assistance that includes assistance for the full insurance plan year post-transplant. It’s an essential part of a longstanding public-private partnership that provides for the significant health care needs that go together with kidney failure—dialysis, specialists to treat accompanying medical conditions, medications and, for those healthy enough and fortunate enough, kidney transplant.
Over two-thirds of the ESRD patients who turn to AKF for financial assistance are on Medicare. They turn to us to help pay their insurance premiums for Medicare Part B, Medicare Advantage and Medigap supplemental insurance. It’s vital for patients living with ESRD to have a comprehensive health insurance plan to cover ongoing dialysis treatments and all of the other health care that goes along with it: specialists to treat accompanying medical conditions like diabetes and heart disease; prescription medications to treat the many complications of kidney failure; and, for about 20,000 ESRD patients a year, transplant.
Some ESRD patients elect to stay with their employer group health plans or COBRA, as permitted by federal law, to provide comprehensive benefits. Though most ESRD patients qualify for Medicare regardless of their age, in 20 states ESRD patients under age 65 are not guaranteed access to Medigap plans to cover the 20 percent that Medicare does not cover (with no out-of-pocket maximum). For them, employer-provided plans or commercial plans are often better suited to their circumstances—especially if their private insurance also covers their families.
We help patients with all types of insurance plans. We believe that patients should have whichever type of insurance best meets their needs—even if they need charitable assistance to help pay for it.
Our insurance premium assistance is what makes it possible for many dialysis patients to qualify for the transplant waiting list, go through the workup process, and have the transplant surgery. Without comprehensive insurance, these patients would not be able to have a transplant.
AKF continues to provide charitable premium assistance to HIPP grant recipients for the remainder of the insurance plan year after they receive a kidney transplant, giving them support as they recover from surgery and resume the lives they had before kidney failure. In 2018, our assitance enable transplants for more than 1,000 dialysis patients—5% of the nation's kidney transplants.
HIPP was established in 1997 under an advisory opinion from the U.S. Department of Health and Human Services. This advisory opinion allows dialysis providers to make voluntary contributions to AKF and gives AKF sole determination of whether a patient qualifies for a grant—a decision based only on the patient’s financial need, not which health insurance they select, or who their provider is, or whether their provider contributes to AKF.
We consider only a patient’s financial need when determining whether the patient is eligible for assistance from the HIPP program. Applicants must complete a worksheet that documents that they have very low income and assets relative to expenditures. It doesn’t matter to us where our grant beneficiaries are treated, by whom, nor does it matter what kind of insurance they have. When a patient comes to us for assistance they already have an insurance policy. HIPP is there to help them pay for premiums that they would otherwise not be able to afford, and HIPP grants cover a patient’s full policy year.
AKF has never turned away a patient in need who qualified financially.
Health care for patients with chronic conditions like ESRD is expensive. But having health insurance is not something that should only be available to healthy people.
A growing number of insurers nationwide are refusing to accept charitable insurance premium payments on behalf of their policy holders—a trend that should alarm anyone with a chronic or expensive-to-treat medical condition.
These insurers are effectively “redlining” ESRD patients—erecting barriers that make it difficult, if not impossible, for them to pay their insurance premiums.
One elderly Tennessee man learned his insurance company had rejected his wife’s Medigap insurance premium payment from AKF after his wife died of a serious infection that required hospitalization. Her policy was canceled for nonpayment while she was in the hospital, and he had no way to pay the medical bills he received for her care at the end of her life.
Several insurers have changed their policies to disallow direct or indirect charitable assistance—requiring patients to sign an attestation that they are not receiving help from a nonprofit. For low-income patients who could not otherwise afford their health insurance premiums, this often leaves no option other than to pay out of pocket and accumulate medical debt until they can qualify for Medicaid.
These insurer actions are driven by profit, pure and simple. By dumping their sickest and most expensive patients, insurers boost their profits. It’s cruel and it discriminates against a disabled group of low-income, mostly minority Americans.
The American Kidney Fund is fighting for patients both nationally and in the states. We have been urging the Centers for Medicare & Medicaid Services to adopt a uniform set of guardrails that would govern how bona fide nonprofits could provide this vitally needed assistance to patients.
AKF comment letters and statements
- AKF statement on California Health Assembly passage of AB 290 (March 29, 2019)
- AKF statement on California AB 290 (January 29, 2019)
- AKF statement on California Senate Health Committee Vote
- AKF statement on AHIP letter to HHS
- American Kidney Fund letter to HHS Secretary Azar correcting false assertions in the letter from the insurance industry
Congressional comment letters and statements
Comments from the broader patient advocacy community
Read what other organizations have to say about the importance of protecting charitable premium assistance for people with chronic conditions.
- Medicare Rights Center
- Families USA
- Chronic Disease Coalition
- Consortium for Citizens with Disabilities
- National Council on Aging
- National Health Council
- AB 290 will take charitable premium assistance from patients like me (March 19, 2019 -- Sacramento Observer)
- AB 290 poses serious threat to California dialysis patients (February 8, 2019 -- Chronic Disease Coalition)
- Chronic and Rare Disease Groups Raise Alarm About California Bill That Threatens Access to Insurance Coverage for Kidney Patients
- A Social Workers View on Senate Bill 1156 (Inland Empire Community News)
- Vivir con diálisis: como llegar a fin de mes (La Opinión)
- A case for charitable health care (Capitol Weekly)
- Opinion | Dialysis patients facing new insurance obstacles (Memphis Commercial Appeal)
- Kidney patients in SC being forced off of private insurance (The Island Packet)
- Congressional letter urges HHS to protect charitable premium assistance (Nephrology News & Issues)
- Allow charitable aid for kidney disease (Chicago Sun Times)
- Don’t abandon people with kidney disease (News & Record)
- Power to the Insurers (Morning Consult)
- Insurance justice for kidney failure patients (Huffington Post)